Law and Health: due process and civil society

Ice cream and hypothermia: a very personal story

November 1, 2012

When I was a child living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.

I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.

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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.

I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.

The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.

A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.

And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.

I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.

If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.

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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.

This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.

Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.

This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.

Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.

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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.

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There are no words to describe my emotions after reading your blog. To think of all you have gone through, Val…. how absolutely HORRIBLE… all those operations, the hypothermia…. you have suffered so much. My heart goes out to you. You have written the details of your story so well, though, and I truly admire you for that. I could “feel” what you were expressing. I do hope you take good care during this winter season, my dear friend. Sending you much love and gentle hugs.

Thank you for your kind words, Rachael. You have said everything I could hope to hear. It’s hard to write something so personal but sometimes I think it’s necessary because it may help to give a voice to everyone who has been through a similar experience. Love and gentle hugs back to you, my friend.

Thank you for sharing your personal and emotional experience through these operations. I too had my tonsils out at an early age and have since in my life been in hospital many times for various reasons. So I can identify with a lot of what you say. When I had my hysterectomy it was done in a brand new hospital here in France and I recall how glacially cold it was and so white – just like something out of a science fiction movie! Temperature control and dysfunction is part of M.E. and difficult to live with. I don`t like the winter either and at times feel as if my whole body is cold. Of course once cold it`s so hard to warm up again. So I think we have to try to keep in the same environment and avoid the extremes. Sending you some warm hugs.

Thank you so much for your comment, Ros. I’m so sorry that you have had similar experiences. You’re absolutely right – we have to control our environment as far as possible but that takes more energy in itself and sometimes it’s just not possible which is when it can become dangerous. And, of course, other people will often perceive us as being over-sensitive and demanding 😦 That’s partly why I decided to take a risk and share this story. Sending warm hugs back to you.

Thank you for this post Valerie, how great that you managed to be taken seriously with regard to your temp. Unfortunately ‘try wearing warmer socks’ said by my daughter’s GP, doesn’t quite cut it for understanding faulty thermostat control in ME. You give me more confidence to be firm with medics who trivialise her condition and half heartedly

Thank you for your feedback, Lou. Yes – as you say – “warmer socks” and the like just doesn’t work. It took me a long time to be more assertive with anyone in the medical profession (and I still find it too easy to become defensive and angry when I’m clearly not being properly heard) but, just occasionally, it can help.
Good luck with the fight for better treatment for your daughter. I wish you and she didn’t have to go through any of this.
Very best wishes to you.

Low body temperature is a classic symptom for we Lyme disease patients – I read somewhere that the bacteria thrive better at low body temperatures and have a way of down regulating their environment ie our bodies to suit themselves. Burrascano points out that it is important to keep our core body temperature up and so swimming is not always helpful for those needing to gently exercise unless of course you are in a hot pool. Lower body temperatures and chills were a very common symptom of my Lyme Disease but since my recovery on long term antibiotics I no longer have that problem. There are many Lyme patients who benefit and symptoms improve when they spend a vacation in a warmer climate interestingly those with RA and MS also report similar findings. However as more patients with RA and MS as well as ME are being found to have spirochetes in their blood and being diagnosed with Lyme disease then it is no surprise to me.

As to arythmias it is a common problem for patients with Lyme Disease one doctor I know her husband developed heart block as a result of Lyme disease ( another common symptom of Lyme) he recovered fully after many months of antibiotics. There was a recent study done in France which found Borrelia DNA in a patient with heart disease – but doctors need to look before they will find and with the controversy about Lyme they don’t look. My friend who has heart problems is prescribed life long treatment of Doxycycline ( often used to treat Lyme) her heart consultant tells her that they don’t know why but they know it works for many patients like her they have in this area of Guildford. I wonder how many of them actually have undiagnosed Lyme Carditis – no matter, the treatment works.

Interestingly recent research published shows Lyme Disease ( Borrelia) can form biofilms – and from the master Dr MacDonald – another gem- Biofilm infections and sub-acute bacterial endocarditis:

‘It is now understood that the Bacteria which cause vegetations in bacterial
endocarditis
actually exist in biofilm communities
and that these SESSILE communities
ADHERE to the Endocardial cells and form Visible bumpy deposits (excrescences) which are never seen on a healthy heart valve.

Hi Valerie, I have ME and was told by my neurologist that my hypothalamus has a lesion which is why my temperature control was awry, along with other regulatory things such as appetite and hormones. I’m typically a degree below what is considered normal. I wear woolens all year around – not much else that can be done I don’t think.

I thought it so tragic that not only did you lose a friend but also their partner, to suicide. I have missed so many funerals and also not been there to comfort those mourning. I think it is something thoroughly overlooked by other folk, that we do not always have the time, space or energy to grieve when we want to.

The support offered by theatre staff cannot be understated. Best wishes and thank you for writing this article – much appreciated,

Thank you so much for your comments, Sarah. Yes, the hypothalamus is clearly a major culprit in all of this.

Thank you also for your comment about the loss of my friends. I did wonder whether to include this part or not but in the end I decided to put it in for the reason you identified. Having our grief processes limited or stifled by illness is something many people do not even think of if they contemplate the effects of chronic disease and I decided it was an appropriate time to make the point. Thank you for hearing it.

And yes – I was extemely lucky with all the medical staff eventually. It took some time to get there, however, and also to learn what help I needed to request. It is something I now try to pass on to other people as it can completely transform the nature of a difficult medical experience.

I can empathise with your persistently lowered temperature readings. I have had this for very many years with my ME also. I haven’t ever lost consciousness as a result of it (I don’t allow myself to get that cold) but it’s been a constant passenger for many decades with readings, in even the best of years, consistently below 35C . I had a bad ME relapse 8 yrs ago and my already faulty temperature control unravelled completely. I have not regained that ground entirely though things are not as horrific as they were during that acute assault. I find wearing heavy (or simply ‘warm’) clothing difficult due to hypersensitivity which first presented contemporaneously, and still have to wear very light clothing in the home with a much higher ambient temperature than would be normal for most houses. I turn a very odd shade of purpley-blue if I get the slightest bit cold. Like you, I have been unable to find anyone who is understanding of this condition nor actually remotely interested in it. I have to presume my thermostat has been nudged inappropriately, and would rather like someone to nudge it back please! But I’m very glad you had your ice cream at long last..I hope it was well worth the wait!

Thank you, Lilypink. I’m so sorry you have the same problem. It’s something most people cannot begin to understand which is why I decided to write about within a broader context. The idea that you can’t keep warm by just putting on more clothes or exercising more (!!!) is totally alien to most people’s experience.

What is strange is that no doctor takes this seriously. The only reason it isn’t potentially fatal is because we have had to learn how to manage the condition. Yet again, the medical profession gets away scot-free because we do the job for them 😦

I do contemplate whether or not any treatment we may receive in the (hopefully near-ish) future will correct these sorts of imbalances? It would be wonderful to think that it might, but I’m equally resigned that it might not 😦

Hi Valerie
I’ve only just read your nov blog….in may 2013… Life has been a little overwhelming with relocating so haven’t had much time for social networks etc…
Just wanted to say my heart goes out to you, and I’m thinking of you. I had no idea what a terrible time you’ve been through. I’m left feeling quite sad after reading the above…and wishing you didn’t have to go through all that.
So, hope to meet up again some time, and hope you have a little time and energy to practise your guitar and singing. Big hug. X